Little known, but cherished by patients and families, palliative care is growing in Maine. 

Stuck in the hospital with newly diagnosed lung cancer and chronic obstructive pulmonary disease, William Bair Jr. wanted one thing: Christmas dinner with his wife and children. 

Lying in a room at Central Maine Medical Center, Bair had been looking forward to the holiday. But unless his wife, two teenage daughters and stepson wanted to spread food across Bair’s hospital bed and eat off the tiny tray that pulled up to it, Christmas dinner wasn’t going to happen. 

Until Jackie Fournier got them tables and chairs, place settings and holiday napkins.

“She pulled that off for us,” he said.

It was a small thing, but it meant everything to the Wales man and his family. 

Nearly a year and a half and two hospitalizations later, Bair is home, but Fournier is still involved. After insurance balked at paying for medical equipment, she helped the family get an electric lift to make it easier to get Bair, 63, in and out of his wheelchair and a machine to make it easier for him to breathe.

“She put a burr under some people’s saddles,” Bair said.

Like many Mainers, Bair had never heard of palliative care before Fournier walked into his hospital room. He’s glad to know about it now.

“It’s someone to run interference for us,” Bair said. “Somebody to help us do the yards and yards and yards of paperwork and red tape and trying to get the things we need. They just made that so much easier.”

It’s often confused with hospice, end-of-life care focused on comfort and quality of life. But palliative care programs and specialty nurses like Fournier are less about helping patients at end of life and more about helping patients navigate life.

They help them talk to doctors, understand medical procedures and figure out how to deal with side effects. Help them discuss diagnoses and medical decisions with family. Help them with ordinary needs that become extraordinary in the middle of a health crisis — such as hosting a holiday in the hospital. 

In Maine, palliative care’s popularity is growing. 

More programs. More patients.

More people happy with its work.

“I never had heard of it before,” said Bair’s wife, Stephanie Parker. “It’s really nice to have somebody there to just talk to you and listen. And to mend some things, things that could be helped.”

A chilly reception

Palliative care is designed for people who have serious medical needs — sometimes life-threatening, sometimes not. Provided by doctors, nurses, social workers and others, palliative care focuses on symptom relief, stress relief and quality of life for both patient and family, as well as general support through a tough time.

Hospice care typically focuses on providing comfort to people who are dying.

Both can be paid through insurance.

The two are often confused, especially by new patients. When Fournier walks into a hospital room and says “palliative care,” families often hear “hospice.”

The reception can be chilly.

“Arms are crossed, legs are crossed and preparing themselves for, I think, us saying, ‘Uh, you know, I just heard … the doctor just told me … .’ I think they brace themselves a bit,” she said.

Both palliative care and hospice have been around for decades, but hospice has gotten more attention. It’s only in recent years that palliative care has developed into a specialty of its own.

“Some of us have always known it should be front and center in health care, but others are coming to it, just like with hospice,” said Kandyce Powell, executive director of the Augusta-based Maine Hospice Council and Center for End of Life Care.

Palliative care supporters say all of Maine’s largest hospitals — and many smaller ones — now have some kind of palliative care program. St. Mary’s Regional Medical Center in Lewiston has one of the newest. It started in January as part of a partnership with Androscoggin Home Care and Hospice.

Individual doctors and others provided palliative care at St. Mary’s prior to January, but the new program offers more formal support, including a trained nurse practitioner from Androscoggin Home Care and Hospice to meet with patients.  

“It’s really about helping them live life fully and paying attention to their goals,” said Elizabeth Keene, a St. Mary’s vice president who has championed the palliative care program. “So if someone says to us, ‘My goal is to go home so I can go to my grandson’s soccer games this summer,’ that might lead to different decisions than someone who says, ‘I want every possible experimental treatment done.'”

Typically in palliative care, a trained specialist is called in to talk to the patient and family. Nurses or doctors can ask for a consultation if they think the patient would benefit. More rarely, the patient or family member makes the request.

The specialist can spend hours with patients and their families, talking about the illness, learning about the patient’s wishes and goals, figuring out what’s needed.

Sometimes the need is simple.

“If somebody needs eyeglasses because they were in an accident and their glasses broke, they’ll bring them glasses,” said Brenda Williams, a nurse clinical coordinator in the ICU at CMMC. “They’ll find out what their prescription is and they’ll bring them a set of glasses. Maybe a couple-of-dollar pair of glasses, but all those little things are so important.”  

Other times the need is more complicated.

Robert Melvin was hospitalized with a heart problem and chest pain in March. It was the latest health concern for the 79-year-old from Belfast. For the past 26 years he’s required regular dialysis for kidney failure.

“I made peace with my maker a long time ago,” he said.

But while some family members knew his wishes regarding medical care, he hadn’t told his whole family. And that presented a potential problem.

His daughter, Rebecca Bureau, heard about palliative care from a co-worker who’d had experience with it. Bureau told her mother about it, and she asked for a consultation to help the family have The Talk.

“It’s quite the emotional thing, but they were very kind and organized. I don’t know how they do it, because it’s an extremely difficult time for the family involved,” Bureau said. “They were just really kind and knew how to hear what each side was saying and help the family come to grips with that.”

By the end, Melvin and his family had a plan that included hospice. Everyone knew his wishes — yes to dialysis, no to returning to the hospital, no to resuscitation — and they knew Bureau would be the one to oversee his directives.

“That kind of relieved me from a lot of the guilt and the burden of feeling guilty,” Bureau said. “We went through what he would allow and what he wouldn’t, which was really hard for all of us, but it was his wishes. And they were just there to think of different things and to clarify and to provide assistance.”

Melvin and his wife were happy, too.

“Everybody’s on the same page now,” Melvin said. “They all know what I want to do and they agreed.”

Word of mouth

When she was in the hospital, Teresa Collier didn’t need someone to help her talk with family. She needed someone to help her talk to her doctors.

The 53-year-old mother of two landed in the ICU at CMMC last summer after a mild infection turned dangerous. She started with shortness of breath and ended up with a tube down her throat to help her breathe while doctors scrambled for a diagnosis.  

“You just can’t believe that’s your life at that moment,” she said.

It was terrifying.

“I didn’t know if I was going to leave the ICU alive,” Collier said. “That’s when Jackie (Fournier) came in.”

While doctors worked on finding answers to Collier’s condition, Fournier explained how lungs worked, showed her pictures of her lungs, outlined what was going on. 

“She was able to help me understand,” Collier said. “And she was there at times when the doctors came in … like an intermediary kind of thing. So they could understand where I was at.”

Fournier became someone Collier could talk to. 

“She sat down and listened to me, just listened to what I was going through,” Collier said. “She taught me cribbage. She used to play cribbage with me. I mean, I have my family and I have my church family, but it was just nice to have someone from the medical field to try to help explain what was going on and maybe what things you need to be thinking about.”

Collier went home to Lisbon after a month and a half in the hospital. She was so pleased with the palliative care she received that she asked for Fournier again in January — this time for her hospitalized grandmother. 

“I think it’s very important that there’s someone there who can help you through that in a very caring and compassionate way. And she does that very well,” Collier said.

Although new patients and families are often initially confused about palliative care, experts say they tend to recommend it to others after their experience. That word-of-mouth is a big part of the reason palliative care is growing in popularity.

When CMMC started its program in 2010, it handled 284 palliative care cases. Last year it had 648.

“There are days when we’re seeing 10 percent of the patients in the hospital,” said Bruce Condit, who heads CMMC’s palliative care program.

The program started with a single nurse practitioner. It now has two nurses, a part-time social worker and a part-time doctor.

MaineHealth, the largest health care organization in the state, has also seen its palliative care program grow since it began in 2004. The need is so great that it has a system-wide effort to train more doctors in palliative care techniques so patients can get some of that help during office visits.

“It starts with a conversation,” said Isabella Stumpf, palliative care medical director for MaineHealth. “Who is the patient? What do they understand and know about their illness and their prognosis? Talk to them about what are their information preferences. What are their goals? What are they hoping for for function? What are they worried about and what are their fears? What are they willing to endure?”

A few months after it formalized its program, St. Mary’s is already seeing an increase in palliative care numbers. Eventually, it expects 4 to 6 percent of its admitted patients will get a palliative care consultation.

“As time goes on and this becomes more acceptable, I think more and more people are willing to take the health care they feel is right for them,” said Nastasha Horvath, an Androscoggin Home Care and Hospice nurse practitioner who does palliative care at St. Mary’s. “You’re allowed to ask the questions about risks and benefits of procedures and decide what’s right for you, and palliative care can really help people do that.”

Hospitals like the fact that palliative care patients and families tend to be more satisfied with their hospital experience — an increasingly important factor since hospitals are now more often judged on patient happiness. They like that palliative care patients sometimes have better outcomes than others.

And even though it costs something to train and hire specialists, Powell at the Maine Hospice Council pointed to studies that show palliative care is a cost-effective way to get happier, healthier patients.

“We’re taking time to ask patients and families what they want and if what we’re doing is making a difference in their lives,” Powell said.

 She believes there’s a lot of room for palliative care to grow in Maine.

“It’s still relatively in its toddler-hood, if you will. It hasn’t been in most of our institutions for that long,” she said. “What I hope to see is that it becomes an integral part for how our health system develops.”

In Wales, Bair and his wife credit palliative care with making their lives better, both in and out of the hospital, in small ways and large.

“The nurses and aides have other things on their minds,” Bair’s wife said. “Jackie was right on it, (saying), ‘What do you need?'” 

They’ve recommended the program to family.

Bair, for one, doesn’t like to consider his life without it. 

“Oh, brother, I don’t even want to think about it,” he said. 

ltice@sunjournal.com

What is it?

Palliative care: The goal of palliative care is to help patients who have serious illnesses feel better. It prevents or treats symptoms and side effects of disease and treatment. Palliative care also treats emotional, social, practical and spiritual problems that illnesses can bring up. When patients feel better in these areas, they have an improved quality of life.

Palliative care can be given at the same time as treatments meant to cure or treat the disease. You may get palliative care when the illness is diagnosed, throughout treatment, during follow-up and at the end of life.

Hospice: Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the patient is not going to survive the illness.

“It’s really nice to have somebody there to just talk to you and listen. And to mend some things, things that could be helped.”

— Stephanie Parker, wife of a palliative care patient

“Arms are crossed, legs are crossed and preparing themselves for, I think, us saying, ‘Uh, you know, I just heard . . . the doctor just told me . . .’ I think they brace themselves a bit.”

— Jackie Fournier, palliative care nurse practitioner, on the reception she gets when she introduces palliative care to patients and families

“She was able to help me understand. And she was there at times when the doctors came in . . . like an intermediary kind of thing. So they could understand where I was at.”

— Teresa Collier, palliative care patient, speaking about palliative care nurse practitioner Jackie Fournier

Copy the Story Link